When I was 31 years old, my Alopecia Areata progressed to Alopecia Totalis and I lost all the hair on my head for the first time. I have had Alopecia Areata since I was in primary school. For most of my life it was patchy and easy to cover up. It sounds naïve, but I don’t think I had ever considered that one day all of my hair might fall out and I was not in any way prepared for that eventuality. It crept up on me very quickly until one day it seemed I had no hair left.
I don’t think anyone realises how closely we link our hair with who we are until it’s not there. I did not recognise myself. I could not look at myself in the mirror because I hated the reflection. I had bought my first wig and, when I put this on, I hated the reflection even more. People might think, “Oh, it’s just hair!”. For anyone who has experienced hair loss, they will tell you it’s so much more than that. I lost my identity, my self-worth, my confidence to walk into a room, and comfort in my own skin. It felt like I was losing layers of myself, one at a time. I didn’t know who I was anymore. And as if that wasn’t enough to deal with, my relationship also started to crumble.
At the time, I had been dating someone who, in hindsight, was never going to be the right person and did not have the emotional capacity to stand by me through such a significant experience. However, hindsight is a wonderful thing. In that moment, I thought this was my person. When the relationship very quickly started to break down in alignment with my hair loss, I took it exceptionally personally.
The relationship unravelled perfectly in sync with my hair loss, and it was very obvious that the hair loss was the catalyst. As I became more self-conscious, I began leaning on my partner for support, seeking validation and reassurance, expecting them to tell me everything was fine, and they could see past the changes. But instead of support, I felt a huge empty void between us that bordered on resentment. And maybe that’s something those of us with hair loss or any visible condition can relate to: the painful realisation that not everybody will be accepting of it and some may even regard it as a huge inconvenience on their behalf.
Without digressing too much, I discovered he was becoming close with a much younger girl. She looked uncannily like me but with long blonde hair. The torment of this was next level. No matter how hard I tried, I couldn’t bridge the emotional distance between us. I knew he was pulling away because of my hair loss, something I had zero control over. The ache of that realisation was almost harder to bear than the hair loss itself. Within about 4-6 weeks of my hair falling out, he broke up with me and I never saw him again. In one fell swoop, this served to validate all the negative views I held about myself.
This was the start of a really low point for me. I felt like I’d lost everything. My hair. My identity. My relationship. My sense of self. But, looking back, it also became a turning point, forcing me to re-evaluate the decisions I was making and how I was living my life. If there’s one important thing I have come to realise, it’s that moments like these can be as defining as they are devastating. I wouldn’t be writing this if I hadn’t come out the other side, even if it has taken years of hard work to get here.
For anyone going through this kind of experience, whatever the cause, I want to say: your worth does not hinge on your external appearance or even on the people who choose to stay or leave during your hardest times. It took losing everything I thought I was to realise that I am more than my hair and certainly more than the opinions or commitment of someone who couldn’t see past the surface.
It's incredibly difficult. There have been a lot of tough days. Days where I have feared even the simplest of tasks because of the nagging fear of people’s comments or reactions. The stress of having to figure out how best to break the news to yet another date and wait to see what their response will be. Spending the day in bed crying because someone has told me they can’t see past it and I’m feeling so incredibly triggered.
But in the darkness, I began to find strength. Thinking back, I honestly don’t even know where I garnered it from. But I did. And slowly, I started to make small steps forwards and small changes that eventually began to snowball and translate into bigger steps forward and bigger changes. Don’t get me wrong, it was not a linear journey in the slightest. There were huge bumps in the road. The thing is, this is never going to be a light switch that you can just flip. It’s hugely traumatic and completely life changing. It requires consistent effort, time and patience. And the first person we often have to convince that we are enough, is ourselves.
I want to offer my support to anyone who feels alone in this, whether you’re dealing with hair loss yourself or supporting someone else. Or maybe you have another visible difference. Sometimes, the journey feels isolating because people don’t talk about it enough. I thought that I was completely alone in the thoughts and feelings I was having. It wasn’t until I started connecting to other people with hair loss that I realised my feelings were completely normal and valid. That’s why I wanted to open up about my lowest point here: because maybe if we share our stories, we can create a community that truly understands what it feels like to navigate this.
There’s nothing easy about it, but there is something deeply powerful about embracing our vulnerability. Over time, I have built myself back up. I had a major blip when my hair fell out for a second time and progressed to Alopecia Universalis after a couple of years of spontaneous regrowth. The process of my hair falling out for a second time felt even more painful than the first time, I think because I felt so disappointed. But, in terms of my response to it, even this was nowhere near the lows I had experienced before. I bounced back so much faster and felt so much better equipped to deal with it. I learned to stop equating my worth with my looks and found people who accepted me, hair or no hair. I started meeting other people with hair loss and realised that my journey wasn’t unique, that my pain and rebuilding were shared experiences. And in that, I found hope again.
If you’re struggling, I hope my story can be a reminder that you’re not alone. Lean on people who are truly there for you. It’s a hard thing to do, but don’t let anyone make you feel “less than” because of something you can’t control. And if you’re supporting someone with hair loss, know that your presence matters more than your words. Sometimes just being there, listening without judgement, is the best support you can offer.
Hair loss changed me - it was my lowest point, but it also became the foundation for who I am today. So here I am, vulnerable and honest, sharing a bit of my story in the hopes that you’ll find strength in yours.
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